Defeating Hemifacial Spasm: A Story of Resilience and Renewal

Rayna Robb underwent a remarkable transformation for the better following her surgery for hemifacial spasm (HFS) at the University of Maryland Medical Center. 

Since undergoing surgery, Robb has expressed experiencing a newfound love for life that was previously beyond her reach. This has granted her renewed enthusiasm for each day and a chance to enjoy the freedom that life has to offer. 

Life Before Surgery: Navigating the Maze of Hemifacial Spasm

Before surgery, Robb's life was a daily battle against relentless symptoms of hemifacial spasm (HFS), a neurological condition where muscles on one side of the face twitch involuntarily. It began with an eyelid twitch in the late 1990s. Over the years, the spasms crept down her face and intensified to the point that it prevented her from falling asleep at night; she had taken a sleeping pill every night for the last 15 years. 

"Hemifacial spasm became frustrating and annoying," Robb said of her discomfort living with HFS. "I like to be in control in my life, and hemifacial spasm was something I had no control over."

HFS can be managed medically, but the options do not remedy the root cause, which often involves compression of the nerve controlling the facial muscles - the facial nerve - by an abnormal blood vessel. 

Despite consultations and treatments with various medical professionals across different states, including neurologists and plastic surgeons, Robb's HFS persisted. Her treatment options largely revolved around Botox injections, despite the spasms growing worse. As the spasms intensified over the years, they eventually affected her vision, sleep and social interactions.

A Newfound Hope

A ray of hope emerged when Robb found Kalpesh Vakharia, MD, Chief of Facial Plastic and Reconstructive Surgery at UMMC and associate professor of otolaryngology at the University of Maryland School of Medicine (UMSOM), who approached Robb's condition with a fresh perspective. 

Dr. Vakharia sent Robb for imaging to find the root cause of her HFS. Robb's left vertebral artery (VA), a major artery supplying blood to the brain, was found to deviate so far to the left that it pressed against the facial nerve where it emerges from the brainstem. This compression by the artery on the facial nerve was thought to be the cause of her spasm.

"While Botox treatments were helping Mrs. Robb control many of her symptoms, I wanted to make sure that she knew all of her potential treatment options available to treat her HFS," Dr. Vakharia shared. 

Robb's hope came to fruition when Dr. Vakharia introduced her to Mohamed Labib, MD, a cerebrovascular neurosurgeon and Director of the Skull Base 360° Neuroanatomy Laboratory and assistant professor of neurosurgery at UMSOM. Dr. Labib proposed microvascular decompression (MVD), a surgical procedure that aims to relieve pressure on the nerve by placing a small pad between the nerve and problematic blood vessel, thus preventing future contact. MVD holds the promise of permanent relief from HFS.

Still, MVD surgery for HFS involving a major artery is complicated. It's important to get the right balance in relieving pressure; too much or too little could harm the nerve or not fix the HFS. During the surgery, Dr. Labib used a specialized method to monitor unusual twitching of facial muscles, which occurred while another part of the face is stimulated. This phenomenon, known as the Lateral Spread Response (LSR), tends to persist in HFS patients. Once LSR stops, it shows that the pressure is relieved and the HFS is resolved in the patient. 

Robb was apprehensive of the "brain surgery" initially, but embraced the surgery as her best chance for freedom from the debilitating spasms that had plagued her every day since it began as a mere eyelid twitch. 

"It's satisfying to see Mrs. Robb find relief from HFS, especially after enduring it for 26 years," Dr. Labib shared.

Life After Surgery: Embracing Freedom and Joy

Following the successful surgery with Dr. Labib, Robb experienced a remarkable transformation. Waking up spasm-free in the recovery room was nothing short of a revelation, marking the beginning of a new chapter in her life. After 26 years, Robb is now able to reclaim simple joys such as reading and socializing with renewed vigor and enthusiasm.

Robb gives credit to support she received from HFS support groups on Facebook, such as the Hemifacial Spasm International Support Group and Hemifacial Spasm (HFS) Worldwide Support Group, where she connected with others who shared similar experiences. These online communities not only provided emotional support, but also allowed Robb to stand strong in the face of adversity. 

Her husband, Richard, shared, "I love that my wife can smile with joy again, meet new people with confidence, and no longer shy away from photos. The surgery was like flipping a light switch. It resulted in an instant and beautiful transformation!"

Today, Rayna Robb is a living testament to resilience and renewal. Her decades-long journey serves as an inspiration to others battling chronic conditions. With the unwavering support of compassionate medical professionals like Dr. Vakharia, Dr. Labib and the companionship of fellow HFS warriors, Robb has not only conquered HFS but has emerged stronger, happier and more resilient than ever before. 

Rayna expressed gratitude for her newfound freedom. "I'm still amazed at how much my life has improved since becoming spasm free. The decline was so gradual over 26 years that I didn't fully realize how much I was suffering until it was gone! Now, I have rediscovered joy in everyday activities like reading, sewing and even putting on eye makeup - things that were once difficult with my eye constantly twitching. Most importantly, I can now enjoy social situations and live a life full of joy."

To schedule an appointment with University of Maryland Medical Center's Neurosurgery team, call 410-328-6034.